Nipple Sparing Mastectomy with immediate reconstruction
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Hi everyone!
I posted on here once and then couldn't find my way back here! Glad I found you again!
I am with twirlandcurl- ready to rip these TE out of my chest. Thinking maybe we all get together and have a giant TE bonfire when we're all done! I just had my 4th fill but I'm going kind of slow (small chest, thin skin, big baby) so not sure how long it's going to take me. I was driving 4 hours round trip for 15 minute fill appointment but my PS took pity on me. She showed my husband how to do it so now I do my fills at home. So much better because we can do a little every few days.
It's nice to hear that everyone seems to be pretty happy with their nipple sparing surgeries. I know for me it made a huge difference. My incision is below the fold of the breast, too, so my PS said when I'm all done you won't even be able to tell I had a mastectomy so how COOL is that!
Kate
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Kate: Now my DH gives himself several insulin shots a day, but I don't know if I would want him doing a fill! I was a VERY big baby for my fills and took pain meds beforehand. He knew how much it hurt me. I think it would be hard on him to hurt me too. That is awful you were driving so far though. Long days and tiring days.
Twirlandcurl: glad you made it through the night! I survived too. Today it's "behaved" a bit better so maybe it learned it's lesson yesterday!
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bcincolorado-
I'm still pretty numb so the actual fills don't hurt too much. My husband's done two so far with no problem.
I noticed that you and others posted about pushing on your TE's because they feel like they're in the wrong spot. Is it ok to do that? I was trying to do that, too, but was worried I might tear something. Feels like my TE are too far apart, too. I asked my PS about it and she said it's just the way my body is built. I'm hoping the implants don't look too fake. I was a small B before all this and just want to go to a full B or small C but not if it's going to look strange. Wish I could get the new implants that everyone is talking about but my surgeon isn't participating in the FDA trials.
Kate
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I push on mine all the time. My PS said.."go for it sister, you wont be able to move it anyway without a lot of pain"
Thanks buddy..
Woke up at 5am laying on my right side..after realizing that I am laying on my TE side and a few ohhs and ouches..my DH tells me "sweetheart-turn over on your other side"
I am all for the TE bonfire..or maybe stap some M-80's to it and blow it up...Hmmmmmmm
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You girls are a hoot!
Kate, I'm glad you found us again. You can save this thread to your favorites, so you won't have a problem finding it again. Just go under favorite topics and save.
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Kate: I never asked my PS about pushing it down. Since I have just one side done I can't compare if they are where it should be or not. Even though it is "skin sparing" mx I imagine there is some skin lost too because of the surgery since they have to stitch you up and everything. I know I am definitely NOT even.
twirlandcurl: I would LOVE to sleep on my TE side! That is my "normal" side to sleep on. Each night I try to roll over there and then just say "ouch" and roll back. I asked my PS about it when I saw him last since my mx was in Jan. He said it had to with my nodes taken out on that side. Hope that pain eventually will get better.
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Hello TNLady & All:
I had my nipple-sparing mastectomy in Sept 09 and just had my exchange surgery on Thursday, April 15th.....didn't find y'all til just recently though. You're right TNLady, there's not much to find on nipple-sparing mastectomy. Mine was in right, lower-outer quadrant and yes I'm glad to still have my nipple although it is somewhat stretched! and I thought they grew with pregnancy! That nipple is always "Headlight ON" too! After mastectomy my nipple was terrible looking, black and scabbed both....once it healed I ended up with a "faded" areola. My PS says she can fix this with tattooing, though. I will wait for my implant (Natrelle-saline) to settle and in a few months will probably have left breast lifted for symmetry.
I'm a right-sided sleeper, too. I eventually found a way, with pillow support, to sleep on right side. I'd place a small pillow kinda between left breast and expander and then lay my left arm on a bigger pillow to prevent my arm from pushing down on left breast---which would then prevent any pressure on expander. The small pillow I use is one of those that has the little styrofoamy thingys in it and it forms well where you place it and doesn't feel too hard. Hope this helps.....rest time is healing time and we need all of it we can get! Gotta go now, have appt with PS today for follow-up....everyone have a great day!
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Hi Psalm121, You're close to my neck of the woods! LOL We are glad you joined us, any input you have will be appreciated! My nipple faded after it turned black too. I have gotten used to how it looks, so I think I will just leave it alone for now. I hope things went well at your PS appointment today.0
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Please go to this thread and vote for Linda, who was pregnant when she was diagnosed with bc and now has a newborn infant. We are voting for her to have a mommy-makeover! Voting ends April 22nd! Go to the top of the thread for the link...takes just a few seconds.
http://community.breastcancer.org/forum/72/topic/751050?page=2#post_1803529
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M-80's! Nice touch!!!
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Psalm121-
You're the first one I've seen post about the "Headlight On" thing. I have that with both nipples. I'm uncomfortable in bras of any kind but don't like the headlights showing, either. It's been making wardrobe choices a little challenging. My husband says not to worry about it but I'm sure the last thing my 13 year old son wants to see is his almost 50 year old mom letting it all hang out. (Not to mention all his friends who come over.)
But in the grand scheme of things there are worse things to be concerned with-
like swim suit shopping! :-0
I live in the Phoenix area and we are quickly approaching the dreaded swim season. What the heck do you wear for a swim suit with TE's? I have yet to find a sports bra that feels comfortable and looks normal. I'm thinking finding a suit will be darn near impossible. Did anyone have any luck with this?
Can't wait for my exchange surgery. My husband said afterwards we should have a party and send out birth announcements letting people know the 'twins" have arrived. Hilarious! :-D
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TNLady:
I sure am close to TN! We live in very southern part of KY, right next to KY/TN state line.....US Hwy 27 runs right through our county. Thanks for the best wishes for PS appt....first appt since exchange last week and incision is looking very well, so I'll go to work tomorrow. Sad to find out today that my PS is moving to NC-Wake Forest, waaahhhh! It's amazing the bond I feel with her and was very touched when she told me she stayed in KY long enough to see me through my exchange surgery. She is a treasure and I and her staff all were pitiful and pouting today. I assured her that I am happy for her, my sadness is purely selfishness! So....I will be meeting my new PS on May 10th (same office) because I will be needing a left breast lift probably by July & she is leaving end of May.
Kate33: Ooohhh I so love the party & birth announcement idea....your DH is wonderful with such a great sense of humor. That has helped us through this entire process and sometimes, yes, we are laughing through the tears! My DH loves the "headlight effect" of course, but I agree, 14 yr old son and friends probably would be mortified! I'm scared to even try a swimsuit (due to chemo-weight!). I think TEs would look great in a Tankini, have you ever worn one of those? I only had one TE so my "headlights" are sorta not aiming in the same direction.......yet!! That will be next!!
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Psalm121: I'm a left-sided mx and sleep on my left and do the exact same thing with a pillow at night! I too had the scabbed over nipple after surgery. My PS had told me that sometimes they don't "survive" and fall off!
It's funny, but my BS had not mentioned the option of skin/nipple-sparingn mx, my PS did! He asked if she was was doing it that way so he could plan accordingly. So I had to call her to find out. She told me that she would "try" and fortunately my pathology was clean afterwards.
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bcincolorado-
I wish there were a law where surgeons had to tell BC patients about ALL of their options whether they offer them or not. My first surgeon never said a word about skin/nipple saving mx's either. I just happened to find out about them when I was researching online. When I went back to her and asked her about it she tried to talk me out of it. Then I found out she wasn't trained in the procedure. If I hadn't done any research I would be looking down right now at breasts without nipples. Ticks me off!
I had to drive 2 hours to find a surgeon that does this procedure and I am so glad I did. I would have flown across the country for it.
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Fairport: sorry to hear of the setback with this infection. What are the signs of an infection inside? fever?
Kate33: Tell DH we will toast at the "arrival of twins party" with a drink called the :slippery nipple.
bc colorado: speaking of options, I feel into the surgeon who does the nipple sparing, didn't know it exisited and at the time didn't know about expanders, he didn't mention the expander option either. Worked the other way around for me, luckily. All options would be nice if you don't know procedures exist and what to ask for.
All you girls describing your expander discomfort is making me feel the shifting as well! I'm going to have to numb the pain with a slippery nipple!
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Forgot to inquire in the previous post. At my recent onc. visit I inquired how I would be monitored in the future regarding US or MRIs and I was told that there was no recommendation set. The implant behind the chest wall is a good thing, pushing everything forward and that even a grain of sand would be felt. Examination would be the best. I was told I would not be having any US or MRI's. I was told that with the flap procedures you would have the scans as that would be putting skin on top of the chest wall. What is everyone's onc's follow up plan for those who have the implants such as the one step and not the flaps.
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PB22-
The slippery nipple! I love it! Do you have the recipe?
My surgeon told me the same thing regarding follow-up. She said there would be no point in mammograms because the cancer could only show up in the skin and you would feel something immediately. She wants to see me in 6 months, then once every year until the 5 year mark. She said all I need to do is be really good about self breast exams. She said if I wanted to have mammograms she would order them but didn't think there was any point unless I needed it for peace of mind.
She also said I wouldn't need to take Tamoxifen or equivalent. What is everyone else's experience with that? Is anyone taking it after skin/nipple saving mx?
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Hi everybody
sorry you expender girls are suffering
Good you can laugh about it though!!!my infection was near the surface, probably from a stitch, its responding to antibiotics. Sadly I have a lump on that side also: my PS drained it tuesday, it was "old blood" and it disappeared. Sadly its back now! Hes out of town for the next week and a half. Theres a covering doc for emergencies. I'll watch it and call if it gets bigger. I need to figure this out. blah.
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Kate33: My onc said the same, every 6 month visit with breast exam. I am on the arimidex. I specifically inquired if I would need it being I had the bmx and that they are confident it won't return etc. The onc told me it is to prevent an occurance from anything that escaped prior to my dx and bmx. Apparently if a cell escaped into the lymph it would take 2-5 years to show and thats why the five years of hormonal manipulation. So I guess its liberating not to have anymore mammograms.
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I still have to take tamox after NS. I guess just because I am ER+ and still have my left breast. I dont see to many SE other than some hot flashes and not sleeping well/tired.
The last of my surgi-glue came off today..yeah!!! My nipple looks awesome. A bit lighter in color than the other..but not really noticeable. I was amazed at how pink it looked after that blue-black scab fell off.
I have no headlight there..flat and unresponsive. I am a one headlight girl for now
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Kate: I am on the big T but have just one-side mx too. I got the impression I would still be on it even if I did both because of ER+/PR+.
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bcincolorado-
Maybe I should look into this more and ask my surgeon at my next appointment. There seem to be a lot of women taking it even after mx. I'm really hoping I don't have to as I hear the side effects are nasty. I'm not in menopause yet but I hear the symptoms make you feel like you are.
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twirl, my nipple was flat at first (I had the black scab too), but it perked up after a little while.
fairport, you are in my prayers, it stinks that you keep having these problems.
My doctor said no MRI's, only him, he will do physical exams. I think it is a good idea after several years to have one though, to check for any leaks in the implants.
So, after all the talk about taking meds, I decided to look at my pathology report again last night. I had a scare! Mine says the same for both estrogen and progesterone:
Positive>80%
I freaked out, I guess I was tired. When I saw the positive I thought someone had gotten something wrong. Then when I started really looking at it, and this is where I need verification, is that I only have less than 20% positive, and that is why I do not have to take anything. Is that the way you guys read it?
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Kate: Did you have OncoDX testing done? That might make a difference on how your onco wants to treat you too. Mine said with my onco score, even though I am (was Stage II) the benefit of chemo would be 2% lowering my chance of recurrance. And if you count the side-effects of chemo, he said you have to subtract 1% from that and for 1% better chance of reducing recurrance it wasn't worth doing chemo and putting those drugs in my body.
TNLady, I pulled my Onco score and this is what mine says: There are a ton of graphs and in there is a page that shows ER score of 11.3 positive, PR Score of 8.0 positive and HER2 Score 9.5 Negative. On the front page it shows a recurrance score of 9. It is Genomic Health's report. Is that what you have or did your doctor give you a different version of this report? I wouldn't freak out yet, you can always call your onco office to confim you are reading it right.
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TN: On my path report it showed estrogen: 99.6% favorable and PR 71.3% favorable, meaning they are hormone receptive and therefore need the hormone suppression to prevent reoccurance from anything that would have spread before the bmx. Doesn't matter if you have one or both breasts removed still need the hormone suppression. The oncotype backed this up but the results were from a different test showing a score of greater than 6.5 positive( mine was 9.9) for ER. and for PR greater than 5.5 is the cutoff( mine again was 9.9). Her2 score was negative ( less than 10.5).
The total reoccurance score considering all the factors tells you if chemo is of benefit. I think we were all pretty clear on the chemo but the questioned lied with the hormone suppression therapy.
TN you have listed yourself as ER- PR- meaning you wouldn't need hormone suppression , now you are questioning if you interpreted your results correctly? If your report said "positive" then you would supposedly be a candidate for its benefits as another backup tx.
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HI Ladies, it's been a while since I have been on. I had been preparing for surgery which I had on Tues! I had NSM!!! Everything went fine and I am doing well so far. I was in tremendous pain after surgery, I mean the worst pain I ever felt in my life. It was tight and felt like an elephant was sitting on my chest, it was so compressed. I was out of it and and on all kinds of pain meds. I'm now home and recovering, still very uncomfortable. so any tips on nipple care or pain management are welcome. I wanted to thank you all for your continued support, if it wasn't for finding this tread I would have never known about this procedure or been able to do it. I will tell you all more when I feel better, as right now I'm still pretty tired and weak, but i'm here and on my way. One question, when can I take of this tight sports bra from hell so I can breath? and how do I get rid of this terrible back pain, can you use a heating pad or ice?
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sweetie! wow! Im so happy for you! You really were determined to get this and you did! Im sorry you are hurting...I know
It will get better every dayI put A and D ointment on my nipples every day, it worked great. I think you better check with your PS about when you are allowed to take the surgical bra off. Take the pain pills...we are here for you
Kathy
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sweetie..I felt the same pressure/tightness/hard to breath. It passed after about 4-5 days. I noticed the elephant on the chest feeling was much better after I changed my pain meds. I was taking darvocet and switched to percocet. Big difference.
I also dumped the surgi-bra in favor of a sports bra..and also wore really tight tank tops . Still my preference right now. I was told by my PS not to put anything on my nipple.The scab came off in the shower one day..and it looked beautiful. keep healing up and getting stronger
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Sweetie: glad to hear everything went well. I could never forget that pain, like your underneath a collapsed building. Percocet helped the pain and take it on schedule even if you are not in pain to keep ahead of it. I used the bacitracin for the nipples. The surgical bra was uncomfortable as I was allergic to the elastic. Went to sports bras. Roll up towels of different sizes to tuck under you or raise your arms etc.
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PB22: Great visual definitiion of the feeling right after surgery.
Since I was not in wrapped up at all I can't comment on taking a surgical bra or wrap off. For some reason my PS doesn't do that. My nipple did turn into a big icky scab and it seemed like it took forever to fall off. I took Oxycontin, then stepped down to Vicodin and then to Darvocet......and then there was my friend, Valium to help with those muscle spasms.
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